tennisman

Could you try some counseling? It sounds like you have a lot going on that isn't good and having someone to talk about it all with might help. The gluten free lifestyle isn't always easy and it doesn't sound like some of your 'freinds' are helping any. While drinking may seem like it is helping while you are doing it in the long run it can harm more than help. You need to find a different way of coping or you risk making yourself an alcoholic.

Thanks for the reply . I did counseling last september , I had 9 sessions and after 8 things seem to be improving but a week after the 9th session I went back to square 1 I was allowed 3 more sessions in january they didn't really help . I also am having family counseling at the moment because my sister has epilepsy and it's been difficult to see her ill I will find it difficult to give up alcohol , it helps my stomach pain and back pain a lot

I had been celiac for 8 and a half years and it never bothered me much I just got on with it . But lately I can't deal with it . I hate the gluten free diet it's destroying my head For the1st time I am struggling badly I'm bored of celiac disease I have lots of extra health problems caused most probably by being celiac , I hate it . I drink a lot of alcohol to feel happy , i'm depressed , anxious , angry , frustrated , I don't know what to do ?

I have had friend's recently who don't have celiac disease but tried gluten free food tell me gluten free food is disgusting and it's not a serious disease and it's not bad at all etc I even had one friend who put beer on my food on purpose to try and gluten me It angers me so much . I sometimes wish I could pass celiac disease on too some people.

I just don't know what I can do to start enjoying life again and stop letting celiac disease ruining everything for me it's in my brain 24/7 I can't stop it

Any advice please ?

Mine is low , it started to go up than stopped going up . I take sometimes quadruple my dose and it does nothing :S

I went to Sicily last year for a family wedding , we had contacted the venue before we went and they understood gluten free very well . They gave us different foods to everyone else it was mainly fish and meat . Than they gave us a pasta dish while everyone else had meat . I was skeptical about the pasta being gluten free because it tasted unbelievably good. I got my Dad to check with the waiter like 10 times if it was definitely gluten free lol . It was the nicest gluten free pasta I had ever tried , I didn't believe it was gluten free but it was I think wedding venues normally understand gluten free more than most restaurants

Yesterday I had a small bowel mri study and was given a Buscopan muscle relaxant injection . This is what I found online about Buscopan . Buscopan works by relaxing muscles. This helps to relieve the pain and discomfort associated with muscle spasm in the gastrointestinal or genitourinary tracts.

I had bad stomach pain before the injection yet my pain stopped completely a few minutes after the injection . The nurse said the injection takes 1 minute to work . Unfortunately it was a short life muscle relaxant only lasted 15 mins the nurse said . A while after my scan my stomach became very bad again and was really bad until 3 am Yet this Buscopan injection had completely stopped my pain earlier in the day .

Has anyone had a Buscopan injection before ? I feel it's like a miracle cure If it could stop accidental glutened pain as well that would be amazing , imagine being glutened and you could have an injection to stop the pain ?

I'm one who believes that most humans, even those not suffering from celiac disease, could benefit from cutting back on gluten. I do understand that the current gluten free fad appears to trivialize the gluten intolerant or celiac situation, but it's just that - a fad. It will go away. But without the raised awareness in the last couple years I doubt I would have found out what was causing dizziness that had plaqued me for years. I would wager to say that it's the same for many. And for that I am grateful.

I agree with the first part . But I think a lot of people who cuts out beers , cakes and all the other junk gluten foods will feel better but not because they had a problem with gluten but because they are eating more healthy. I hope the fad will go away I find it very hard to believe celebrities go gluten free for a week and feel so much better and have lost a lot of weight . I'm glad you found out what caused your problems With celebrities I read how they want to make there gluten free range yet I don't believe some of them really know anything about gluten free It's great if they raise awareness but I never find any celebrities who really want to talk and it frustrates me lol.

Over the last year or so I have looked at celebrities and gluten free . It seems so many of them go gluten free to lose weight . I recently read one celebrity who was asked about his diet and he said gluten free " when possible " so really they are 50 % gluten free 50 % non gluten free . Yet when they eat in a restaurant etc and get cc or eat something with gluten in they are fine , yet if us celiac's ate the same food we would be ill for days/weeks

It really frustrates me when celebrities go 50 % gluten free trying to lose weight . It's not a nice thing to say but I really hope they get celiac disease and than they see the difference between going gluten free for weight loss and being forced to stay gluten free for health reasons .

Sorry for my rant but they really frustrate me

I had a Barium meal earlier this year and had terrible stomach pain after drinking the Barium . I drank lots and lots of water and ate extra fruit and vegetables and fibre and the Barium was all gone in about 5 days . I really hated the test lol . You will know when the Barium is all gone when your stool colour is back to your usual stool colour , that's what I was told.

I hope your stomach feels better soon and your results are ok

Can you try eating something that is soothing to your stomach? Maybe Cream of Buckwheat or Cream of Rice or perhaps some applesauce or even gluten-free crackers? That might help a bit. Do you eat soy or consume dairy? If you do have you tried cutting those out for a bit to see if it helps? Are you in the UK? I ask because I am aware that in some places in Europe Codex Wheat Starch is considered safe. If you consume products with that in them it might be a good idea to drop them for a bit and see if that helps.

Since you have been gluten free for a pretty long time it is good that you are checking things out with your doctor. Hopefully you will figure out what is going on soon and be feeling better.

I have never heard of Cream of Buckwheat , I will have to try and find some . My stomach improved from thursday - saturday I had very little pain . It's strange I think I accidentally eat gluten and than my stomach pain improves. I eat dairy , dairy has always been a ? Because I came off dairy for 2 months and my stomach pain didn't improve but my flaky hair dandruff was completely gone and as soon as I went back on dairy the dandruff was back seems connected. I'm in the uk , I very rarely eat wheat starch products. I remember in 2008 my stomach became bad again and also many of the gluten free prescription products changed recipes at the same time , so i'm going to change my prescription products and see if that helps . Thanks , I hope my new doctor figures out what's wrong soon .

Alcohol is one of the worst things you can do for stomach pain. It may stop you from feeling the pain for a short time but it is a big stomach irritant. You are doing the right thing by dropping the alcohol for a while.

If I have my normal stomach pain I drink alcohol and it helps 9/10 times . But for this gluten pain it doesn't work as well. I think I see alcohol as a pain killer. I used to use it to help my back pain a few years ago drinking alcohol was the only thing that helped my back . Is all alcohol bad for stomach or is fizzy alcohol like cider worse than a still drink like wine ? I haven't had any alcohol today and my stomach has been worse

Ask your doctor to write on the MRI request that the contrast needs to be gluten free. Usually the gluten free forms will be a thin liquid not the thick chalky stuff.

For the stomach pain have you tried Pepto Bismal liquid? That usually helps if it is something you can take.

It is possible for the D to take some time to show up. For myself it is 3 to 5 days after I injest the offending food. If I only have stomach pain and get C instead of D it is usually soy that is the offender but that may not apply for you.

Thanks I will ring my doctor Cool , I hope it's nothing like barium lol. I have never heard of Pepto Bismal liquid I will have to get some . My doctor gives me Mebeverine but it doesn't really do anything . When I was 1st diagnosed I got Mebeverine medicine which helped a little , but now they tell me i'm too old for the medicine and have to take the tablets which don't help. I'm usually the opposite D starts after a few hours or the next day. I haven't had a problem with D or C . I also have some chest pain . I'm going to stop alcohol for a few days , I drink alcohol almost everyday because it helps the pain . My mum told me my great grandfather used to drink a shot of alcohol to stop his stomach pain .

On thursday I think I accidentally had some gluten, a very tiny amount from cc . Since thursday night I have had bad stomach pain in the middle and left side of my stomach , I have always thought this type of pain is a gluten pain . It's completely different from the other stomach pain I have been getting the last few years . But I always thought if I have eaten gluten I get D , tiredness and stomach pain . Yet this time I just get stomach pain :S Could it be possible my symptoms have changed ? I really don't understand if it's a gluten pain or something else . It's been going on for 5 days and not improving , normally if I get this pain it lasts 3 or 4 days . I wish I could eat some gluten just to see what symptoms I get from being Glutened .

Also has anyone had a small bowel Mri scan ? I have to have one and on the letter it says I have to drink something but i'm not sure if it's gluten free .

I don't keep up with tennis any more, but... I would think anyone in the public eye like that who has a dietary issue would be best served not to make a big deal of it in public. I say this because someone who is not on the up and up could easily use this against them. And by this I mean like sneaking the substance into their food, arranging to have it thrown on them, etc. Sad but true.

That would be bad. But you would think Djokovic would only eat foods he or his team has prepared , because restaurants are not always telling the truth when they say this dish is gluten free.

A lot of people think Djokovic is on steroids and just using "gluten free" as a bogus way to explain his very rapid and sudden improvement in fitness levels.

I haven't seen many people say this. I see more on tennis sites how people say going gluten free has helped Djokovic and now they think it will do miracles for them lol.

Turned back the clock for me, especially after going basically paleo and raw dairy and eggs. I can personally understand how this might help him. It probably doesn't hurt that he has top level folks working with his whole regimen from training to food. I know I get tired of talking to people about my health even though I have come sch a long way in a relatively short amount of time. I bet he would rather just talk about tennis since he is at the top of his game at present. It still takes a lot of discipline and hard work regardless of the other issues and he looked beyond mentally prepared for today's match with Nadal. Of course, the gluten-free diet might just have helped the focus and mental clarity.

I hope you get to the real root of your complications soon. Just getting DX'ed with celiac after a whole host of other autoimmune complications wasn't enough for me. I had to go over the edge dietarily before I really turned the corner after struggling with the whole strict gluten-free diet. Just keep digging. and, good luck.

I'm glad it helped you I guess your right he wants to just talk about Tennis , I just want him to talk about it maybe he could raise more awareness about celiac disease but maybe not if he only has an allergy and not celiac disease.

Thanks , hopefully things will improve soon

I have to laugh reading this thread because I'm also a big tennis fan and I've been thinking of posting about the same thing!

First, I wonder how much of this is a "fad" and how much is actually medical. In Djoker's case (no, I'm not a fan), he stated earlier this year that the gluten diet was recommended by a new nutritionist he's using. That, coupled with his on-going histrionics and lack of mental stability leads me to believe that it's PROBABLY not celiac, but rather a tool that is being used to feel better and instill more confidence. I certainly hope he's actually ncgs, because it's annoying if he's just "using" this for now.

This is in contrast with Sabine Lisicki, who just made the Wimbledon semi-finals. The story with her is that doctors told her not to have gluten, so I wonder if she actually does have celiac disease. She has struggled quite a bit, going so far as so experience severe cramps and have to be taken off court in a stretcher at the French Open, which she later said was from loss of energy from still learning the ropes of the gluten-free diet.

I'm not familiar with any other top tennis players touting the diet.

Regarding the comment about Djokovic on steroids (and again, I'm not a fan), that's just wildly irresponsible. Tennis is heavily controlled for drugs, and while he's widely disliked, he has been a top player for years. Not fair to accuse someone with no evidence at all.

Cool Who are your favourite players ? I was thinking of posting it a long time ago but kept forgetting lol.

Djokovic said the gluten free diet made him lose weight and become sharper and faster on court and said it had helped him . Now I find he says it's his hard work that has got him to where he is this year. One postive thing is a serbian restaurant in London has added gluten free pasta and beer to the menu because of Djokovic going gluten free. Maybe one day he will say if he is celiac or not , I met him twice I should have asked him lol.

Sabine Lisicki is great I have been a fan since her amazing Wimbledon run 2009, finding out she is now gluten free I like her even more She wrote this on her website - " Doctors recently discovered that I

I have recently found out a number of top Tennis players have said they are gluten free . One minute they say going Gluten Free has helped and the next minute it's there hard work that has helped them and going Gluten Free hasn't done much .

They often say they are allergic or intolerant to Gluten but never say they are celiacs. I really want to find out if they are celiacs or are just avoiding gluten for other reasons.

Also when asked about it Wimbledon champion Novak Djokovic always changes the subject really quick :S If he really is a celiac he could really raise the profile of the disease . But it seems like he is hiding something , maybe he doesn't want his opponents to read about celiac disease , it just seems he is acting like it helps him yet when he has a chance to let the world know about he doesn't want to talk .

2nd thing I read on tennis sites lots of people saying going Gluten Free has helped this player so they think it will also help them . Yet I think they will do the Gluten Free fad diet approach and make celiac less serious. After 8 year's I hate Gluten Free and people want to try it because they think it will turn them into a superhero it makes me annoyed ,we are all forced to stick to the diet and yet many of us develop extra health problems.

Also how can coming off Gluten turn a great athlete into a superhero , since I was diagnosed with celiac disease I have had health problem after health problem it makes no sense.

That's just awful!! It is not recognized like it should be. I think people just think it's a food allergy and that's it. Let me know who it was and I'll kick some butt too!!

It's a shame celiac disease is not recognized like it should be I have had more than 1 doctor say all you have is a food allergy . Hopefully one day people will understand celiac disease better , Thanks

Have you tried cutting soy out of your diet?? It made such a difference for me when I eliminated soy from my diet .

Hope your feeling better soon

I was advised on here to cut soy out , but when I checked all the foods I eat only 1 product had soy in and I very rarely ate that product so don't really have any soy to cut out. I'm glad eliminating soy helped you

Thanks

I hope your testing turns up something. And even if you are not feeling better yet maybe you will turn a corner soon. Just avoid the idiot that doesn't know what celiac disease is.

Thanks , hopefully things improve soon I will do

I would have replied, "Oh really? When did you go to Medical school?"

Not that drs. know a lot about it but I'm assuming this person is not your dr since they are eating in front of you. Tennisman, did you ever find any relief from your symptoms? Or are they still thinking it's refractory celiac? If I were you and these people lived with me I would suspect my food was being tampered with. It has happened to other people here.

That would be a great reply

I still have stomach problems , I have to have a small bowel mri scan and some blood tests . But since refractory was mentioned I have taken advice from here And cut out a lot of processed foods. Also I have not eaten out anywhere , but had no real improvements. I tried cutting dairy out again for a few weeks and think I have improved a little. But I had some dairy this week and it didn't really make the pain worse. I don't normally eat with this person it's just a one off. That's terrible people have had there food tampered with

Celiac is greatly misunderstood--even in the medical community. So, the "average joe" is clueless. Is this person a friend, co-worker, family? if so, maybe they need to be educated about celiac disease?

OR---

we could send Richard over to kick some butt )

OR--

You COULD say...."Celiac IS a disease, but I know how to treat it by eating gluten-free....unfortunately, I think your stupidity is incurable."

That should do it.

I like "Celiac IS a disease, but I know how to treat it by eating gluten-free....unfortunately, I think your stupidity is incurable." if anyone says anything bad too me about celiac disease again I will reply with this

Thanks everyone for the replies and advice

So the other day when talking about Celiac Disease I was interrupted . The person said Celiac Disease that's not a disease and they said it in a nasty way . This person doesn't have Celiac Disease and doesn't know much about it . Yet they told me Celiac Disease is not a disease and acted like it wasn's even an illness and wasn't bad as they eat gluten foods in front of me and said how nice it was . I felt angry at this comment I mean wtf does a non Celiac know about living with Celiac Disease. I feel Celiac Disease is so underated

A question re: this.

You mentioned you recorded the foods. Did you record down the farms/companies for the foods you ate? If not, and if your dietician or the intolerance expert didn't recommend them....they should have. :-( This was part of the pattern for us, quite a few times.

For example, we had a number of different oils, but they were all from the same company. That company processed one of our problem foods on the same equipment line and it contaminated every oil we tried from them. Couldn't figure that out for FOREVER. We had issues with corn, and that turned out to be in every iodized salt (a corn derived product is used to stabilize the iodine). So anything we added salt to was an issue. There are also a number of anti-caking agents in salt that can be issues. Farms will use the same pesticide, so if you have a problem with it, all the produce from them will make you sick. Companies process things in the same lines or in the same facility, so anything from the same company can be an issue with the same contaminants.

I've never had a dietician or an allergist ask me to keep track of companies, but we ended up slowly discovering this and finding it out. I actually was looking so much better after we figured it out that my allergist took notes on what I'd found out about some of the companies so he could use the information with his other patients.

Did you ever just fast for a day or so? That might at least let you know if food is really the issue.

Did they ever look at sensitivities as opposed to intolerances? Like to sulfites, histamines, fructose (malabsorption, rather than sensitivity, which can be a problem with legumes, fruits, veggies, grains, lots of things)? These are such a broad range of foods that it's hard to find a pattern, and they are not well studied as yet, so many docs don't have a clue about them.

Were you ever tested for parasites or bacterial gut infections like H. pylori? These can cause a lot of gut issues, and can also be affected by diet, so a change in diet might make the pain, nausea less, but not go away.

These are foods that companies have modified the genes for. They are modified to have genes that resist pests, genes that have actual pesticides in the genes, genes to grow certain ways or be drought resistant. America has not banned these crops, despite growing evidence that they are not good for human consumption, but I believe they have been banned in the food supply in Europe, currently.

I had a blood allergy test, where they take vials of blood and then test the blood for certain components that indicate a reaction to certain foods, but even my doctor said that it's pretty inaccurate. If you have bad allergies, like the type that are life threatening, it does pretty well. But for low grade allergies, there are a lot of false negatives and false positives. Some of mine seem to be fine, some not so much, but many of the ones that tested positive for me also were making me feel awful, so I'm pretty comfortable avoiding those.

What food intolerance test did your dietician mention? I'm curious because there are only two I know of: for lactose intolerance and for fructose intolerance. There are a lot of factors that can make them inaccurate, I understand, yeah. However, any OTHER kind of intolerance, to my knowledge, there are no tests for whatsoever, like issues with annatto. None for chemical sensitivities, either, usually. :-(

That pretty much what I thought too at first, you know? Then I found out...gluten is everywhere. Mulch and compost often has gluten in it in the fields. Wheat is often a rotation crop with many of the gluten free grains and can cc it from the ground up. They share harvesters, shipping trucks, and often mills with gluten grains that are rarely cleaned enough to avoid all contamination. So that alone is enough to contaminate gluten free ingredients before they even get to the gluten free factory that process them. There is also some gluten in many soaps, including sometimes the ones that are cleaning the machines that process the gluten free foods. It's usually a gluten derived ingredient rather than wheat itself, but all those little touches of gluten sometimes add up to enough contamination for it to be problematic, sadly.

Gluten derived ingredients that have low enough levels of gluten that they are below 20ppm can be used, but sometimes, there are so many of them that it can become an issue, too.

If you're contacting companies, some questions that may be of use are if they test their gluten free products for gluten levels, and if they do, what is the gluten detection level for the test they are using. Often, they will say 'no detectable gluten' left after processing. That's not the same as none, and how much it is depends on what the detection level of the test is.

And yeah - all the research becomes a bit of a pain in the butt at times, I'll be honest. But one gets used to it, I think, and after a while, you've called all the companies so it's not so hard to call one every once in a while.

Hi again,

I didn't write down where the products came from etc , my dietician said I didn't need too. But I always eat the same foods from the same companies so could easily get the list of ingriedents from every item in the food diary. I really don't think my dietician will find anything though lol.

I haven't really fasted for long only a few hours or overnight before some tests.

My Gp doctor said I could maybe see someone who did sensitivities the doctor is a private doctor though , and I can't really afford to see that doctor especially as my sister sae him and he wasn't very helpful .

My doctor tested for bacterial gut infections H. pylori a few times and said that wasn't the problem.

This is the food intolorence site Open Original Shared Link . I found them at an allergy show last year . But apparently the tests are not accurate , bu t the website seems to have positive reviews.

I will have to ask the companies about CC.